Dealing with loss: food and eating in women with ovarian cancer on parenteral nutrition.

BACKGROUND: Malignant bowel obstruction is a common complication of ovarian cancer, resulting in limited oral intake. Home parenteral nutrition (HPN) may be offered to patients in this condition to meet nutritional requirements. However, it is not known how they experience being unable to eat. The present study reports how patients related to food when receiving HPN. METHODS: The investigation was a qualitative study underpinned by phenomenology with women with advanced ovarian cancer in bowel obstruction receiving parenteral nutrition. Interview transcripts were analysed thematically guided by the techniques of Van Manen. RESULTS: We recruited 20 women to the study. Participants were interviewed a maximum of four times and a total of 39 in-depth longitudinal interviews were conducted. Participants could tolerate minimal amounts of food, if they had a venting gastrostomy. Not being able to eat engendered a sense of sadness and loss, and most women found it challenging to be in the presence of others eating. They adopted strategies to cope, which included fantasising about food and watching cookery programmes. These approaches were not a long-term solution; either participants came to terms with their loss or the strategies became less effective in providing relief. CONCLUSIONS: Home parenteral nutrition meets the nutritional requirements of patients with malignant bowel obstruction but cannot replace the non-nutritive functions of food. Healthcare professionals can offer a patient-centred approach by acknowledging the difficulties that patients may face and, wherever possible, encourage them to focus on the positive benefits of interacting with people rather than the loss of eating on social occasions.

Patients' experiences with home parenteral nutrition: A grounded theory study.

BACKGROUND & AIMS: Parenteral nutrition (PN) provides nourishment and hydration as an intravenous infusion to patients with intestinal failure (IF). The aim of the study is to generate theory that explains the experiences of adult patients living with home parenteral nutrition (HPN) and complex medication regimens. METHODS: A grounded theory methodology was used to explore the experiences of twelve patients receiving HPN. A semi-structured interview was conducted and recorded in each participant's home setting. Each interview was transcribed verbatim. The simultaneous process of data collection and analysis was followed reflecting the principles of the constant comparative approach. RESULTS: A total of 15 patients gave written consent, with 12 of them agreeing to be interviewed. All the participants had previously undergone surgery as a result of chronic ill health or sudden illness. Analysis revealed two core categories: stoma and HPN, and these were supported by the subcategories: maintaining stoma output, access to toilets, managing dietary changes, maintaining the HPN infusion routine, access to technical help to set up an HPN infusion, mobility with HPN equipment and general health changes. The strategy of living with loss was demonstrated by all the participants, and this was supported by the action strategies of maintaining daily activities and social interactions. CONCLUSIONS: This study generates new understanding and insight into the views and experiences of patients receiving HPN in the UK. The findings from these participants have been shown to resonate with the Kubler-Ross Model [1] of the five stages of grief. The theory of living with loss was generated by the use of a grounded theory methodology. This small scale exploratory study reveals opportunities for improvements in practice to be considered by the nutrition support team (NST) and other healthcare professionals involved in the patient's hospital stay prior to discharge on HPN.

Burden assessment in caregivers of patients with home artificial nutrition: a need and a challenge.

BACKGROUND/OBJECTIVES: Caregiving can be a stressful task with severe consequences on caregivers' health. Our aim was to evaluate the profile and the burden of caregivers of patients with home artificial nutrition (HAN) in our area. SUBJECTS/METHODS: We conducted a prospective observational study of patients who had started HAN over a period of a year (n=573) and their home caregivers (n=103). Epidemiological characteristics of the patients and the type of HAN were registered. Caregivers' profile data (gender, age and degree of kinship) and Zarit Burden Assessments were recorded. RESULTS: Care recipients had a median age of 79.0 (IQR 87) years, neurological and oncological diseases in 50% and a high rate of mobility limitations (80%). Oral supplements with high-calorie formulas were predominant (60%). The usual caregiver profile was a patient's daughter with a mean age of 53.1 (s.d. 13.4) years acting as the primary caregiver. Burden was absent in 49.5%, light in 18.4% and intense in 32% of caregivers. Intense burden was more frequent in oral over enteral nutrition (42% versus 22.6%; P=0.036). Supplementary nutrition was also associated with higher caregiver burden scores compared with complete diets. In patients with functional limitations, a tendency toward a slightly higher burden was observed. No differences in caregiver burden were detected according to other patient or caregiver characteristics. CONCLUSIONS: HAN type appears to be a factor influencing caregiver burden and therefore, evaluation of caregiver burden should be part of HAN programs.

Quality of life of patients on chronic parenteral nutrition before and after gastrointestinal tract continuity restoration.

UNLABELLED: The issue of the quality of life considering patients with a temporary or permanent intestinal stoma, as well as the necessity for chronic parenteral nutrition at home remain a poorly understood problem. Daily care of the intestinal stoma and the need to comply with sterile procedures required for parenteral nutrition require such patients to commit their time, which secondarily is associated with the broad aspects of social and personal life. The aim of the study was to analyse the quality of life considering patients with intestinal stomas subjected to chronic parenteral nutrition, before and after gastrointestinal tract continuity restoration. MATERIAL AND METHODS: The survey was conducted between May and July, 2014 on a group of 71 patients (33 female and 38 male) who were under the care of the Department of General Surgery and Clinical Nutrition, Warsaw Medical University, operated during the period between 2007 and July, 2014 with a present stoma (32 patients - 45%), as well as after stoma closure (39 patients - 55%). The analysed questionnaire contained 31 questions, and the SF-36 questionnaire was additionally used, determining the quality of life. RESULTS: Analysis of the study material showed differences in the quality of life, considering three most important determinants. Significantly worse assessment of the quality of life was reported by patients with a stoma and subject to intravenous nutrition (83.2±30.5), as compared to those after stoma closure subject to normal nutrition (52.3±33.8). Based on the SF-36 questionnaire differences between patients with a stoma and those without amounted to t(69)=2.84 (p=0.006) demonstrating that those with a stoma reported a lower quality of life. Analysis between younger and older patients, based on the SF-36 questionnaire (t(62.87)=2.49; p=0.016) showed that younger patients achieved lower results, considering dissatisfaction with life (61.55±27.5), as compared to the elderly (80.8±36.9). CONCLUSIONS: The group of patients without a stoma seem to be more independent- the vast majority do not use the help of family members (43.6%), or friends (64.1%). Patients with a stoma more often withdraw from social life. The factor that mostly reduces the quality of life is the presence of a stoma, which impairs daily functioning a lot more than the sterile procedures associated with parenteral nutrition. All patients after stoma closure consider that their overall functioning has significantly improved.

[Home parenteral nutrition; satisfaction of patients and their caregivers with nutrition unit and pharmacy service]. / Nutrición parenteral domiciliaria: satisfacción de los pacientes y sus cuidadores con la unidad de nutrición clínica y el servicio de farmacia.

INTRODUCTION: Home Parenteral Nutrition (HPN) is a practice in continually growing by the significant advantages involved for the patient and the healthcare system. Today, in the investigation of health outcomes is essential to assess the patient s opinion. Among the measures focused on patients with HPN, several studies about quality of life have been done, but the degree of satisfaction with this treatment modality has not been evaluated. OBJECTIVE: To evaluate the degree of satisfacion of patients and their caregivers receiving HPN with doctors, pharmacists and nurses in a hospital. MATERIAL AND METHODS: An anonymous survey was distributed, which consisted of 48 closed questions to patients and their caregivers receiving HPN who voluntarily answered. With survey responses a database in SPSS with the following variables was created: personal, sociocultural, clinical and related to HPN data and valoration of health personnel involved (nutrition area of the Pharmacy Service and Nursing and Medical Nutrition Units) and hospital facilities related to HPN. Also a section of open response suggestions was included. RESULTS: 24 surveys were distributed, 12 to patients and 12 to caregivers. Response rate was 91.7% in the case of patients and 58.3% in the caregivers. 63.6% of patients and 42.9% of caregivers were women. Mean age was, respectively, 46.1 years (SD: 13.7) and 47.0 years (SD: 3.6). Most of patients (55.6%) and caregivers (60.0%) had secondary studies and were pensoniers (72.7% and 71.4%, respectively). Underlying diseases of patients were: radiation enteritis (27.3%), intestinal obstruction (18.2%), intestinal carcinomatosis (45.5%) and Chron s disease (9.1%). With respect to items assessing satisfaction with physicians, nurses and pharmacists, in general both patients and caregivers were satisfied. Suggestions made were: greater amplitude of delivery schedule of HPN and inclusion of audiovisual information. CONCLUSIONS: The degree of satisfaction of patients receiving HPN and their caregivers with the care given by doctors, pharmacists and nurses is appropriate, but it s possible to make improvements to optimize the quality of the whole process.

Introducción: La Nutrición Parenteral Domiciliaria (NPD) es una práctica en continuo crecimiento por las importantes ventajas que presenta para el paciente y el sistema sanitario. En la investigación de los resultados en salud resulta hoy en día fundamental evaluar el punto de vista del paciente. Dentro de las medidas centradas en el paciente con NPD se han realizado varios estudios sobre la calidad de vida, pero no se ha evaluado el grado de satisfacción con esta modalidad de tratamiento. Objetivos: Evaluar el grado de satisfacción de los pacientes que reciben NPD y sus cuidadores con los médicos, farmacéuticos y enfermeros de hospital. Métodos: Se repartió una encuesta anónima y que constaba de 48 preguntas cerradas a los pacientes que recibían NPD y a sus cuidadores, los cuales contestaron de forma voluntaria. Con las respuestas recogidas se creó una base de datos en el programa SPSS con las siguientes variables: datos personales, socioculturales, clínicos y relacionados con la NPD y valoración del personal sanitario implicado (área de nutrición del Servicio de Farmacia y Unidades Médica y de Enfermería de Nutrición) y de las instalaciones del hospital relacionadas con la NPD. También se incluyó un apartado de sugerencias con respuesta abierta. Resultados: Se repartieron 24 encuestas, 12 a pacientes y 12 a cuidadores. La tasa de respuesta fue un 91,7% en el caso de los pacientes y un 58,3% en los cuidadores. El 63,6% de los pacientes y el 42,9% de los cuidadores eran mujeres. La media de edad fue, respectivamente, 46,1 años (DE: 13,7) y 47,0 años (DE: 3,6). La mayoría de los pacientes (54,5%) y de los cuidadores (42,9%) tenían estudios secundarios y eran pensionistas (72,7% y 71,4%, respectivamente). Las enfermedades de base de los pacientes fueron: enteritis rádica (27,3%), obstrucción intestinal (18,2%), carcinomatosis intestinal (45,5%) y enfermedad de Crohn (9,1%). Con respecto a los ítems que evaluaban la satisfacción con médicos, enfermeros y farmacéuticos, en general tanto pacientes como cuidadores estuvieron satisfechos. Las sugerencias recogidas fueron: mayor amplitud del horario de entrega de la NPD e inclusión de información audiovisual. Conclusiones: El grado de satisfacción de los pacientes que reciben NPD y sus cuidadores con el servicio dado por médicos, enfermeros y farmacéuticos es adecuado, aunque se pueden introducir mejoras para optimizar la calidad de todo el proceso.

Intestinal failure and home parenteral nutrition: implications for oral health and dental care.

BACKGROUND & AIMS: Background disease processes, medication and therapies in people with intestinal failure receiving home parenteral nutrition may affect their oral health. To inform oral health advice for this group a study of their oral health status was carried out. METHODS: Fifty-two HPN outpatients recruited from specialised nutrition clinics at a national referral centre listed their medical and medication history, perceived oral health and dental treatment experience in a structured interview and underwent an oral health examination. Findings were compared with 2009 UK Adult Dental Health Survey data, using one-sample t tests. RESULTS: Oral health of the HPN cohort was poorer than the UK norm; patients had more decay (p<0.001), fewer teeth (p<0.001) and fewer sound and untreated teeth (p=0.023) despite similar dental attendance. Hyperphagia, sip feeds, oral rehydration fluids and polypharmacy (in 96%) are identifiable risk factors for caries, xerostomia (in 81%) and thus oral infection risk (including oral candidiasis). Patients were experiencing current problems (60%) and psychological discomfort (56%) from poor oral health. The patient pathway does not include oral health information. CONCLUSION: Dental teams should be aware of the management and prevention of HPN related complications with bisphosphonates, anticoagulant therapy, and parenteral antibiotic prophylaxis. HPN patients may benefit from increased awareness of their oral health risk factors.

A dangerous combination of binge and purge.

We present a 36-year-old female diagnosed with Crohn's disease at the age of 11 years. In 2001, she underwent a total colectomy and further small bowel resection as a result of active Crohn's. Her residual anatomy consisted of 150 cm of small bowel to an end jejunostomy. Subsequently, she developed short bowel syndrome with recurrent episodes of hypomagnesaemia, hypocalcaemia, and hypokalaemia. Dietetic assessment revealed her to be severely underweight at 37 kg with a bodymass index (BMI) of 14.4 kg/m(2) . During her admission, our patient underwent psychiatric assessment and was established on home parenteral nutrition (HPN). At the time of discharge, 1 month later, her weight had increased to 44 kg (BMI = 17.7 kg/m(2) ). Over the following 12-month period, she lost weight (BMI, 15.4 mg/m(2) ; weight, 39.5 kg) and she described a high stoma output (up to 17 L) and dehydration. Assessment of her oral intake found she was consuming an estimated 14,000 kcal and 600 g protein per day. At this time, the possibility of a new form of eating disorder was discussed with the patient and she agreed that her behavior i.e., using her stoma as a purging device, fulfilled the criteria for a diagnosis of bulimia nervosa and she was referred to a specialist eating disorder unit.

Complex home care: Part 2- family annual income, insurance premium, and out-of-pocket expenses.

Annual costs paid by families for intravenous infusion of home parenteral nutrition (HPN) health insurance premiums, deductibles, co-payments for health services, and the wide range of out-of-pocket home health care expenses are significant. The costs of managing complex chronic care at home cannot be completely understood until all out-of-pocket costs have been defined, described, and tabulated. Non-reimbursed and out-of-pocket costs paid by families over years for complex chronic care negatively impact the financial stability of families. National health care reform must take into account the long-term financial burdens of families caring for those with complex home care. Any changes that may increase the out-of-pocket costs or health insurance costs to these families can also have a negative long-term impact on society when greater numbers of patients declare bankruptcy or qualify for medical disability.

Home parenteral nutrition in advanced cancer: where are we?

Patients with advanced and incurable cancer are a compelling group. Questions and comments that these individuals and their families have may include: "My daughter is expecting our first grandchild in 3 months--can I hope to see our new family member?"; "I can't keep any food down--is there anything I can do?"; "I am worried about losing so much weight, and feeling tired and weak--is there anything that may help?"; "Will I suffer a lot?". Indeed, the most pressing concerns of the patient relate to predictions about survival and control of symptoms. The clinician taking care of the patient may wonder what is the utility or futility of home parenteral nutrition (HPN) in both the individual with advanced cancer and in this population of patients at large, whether there is potential for harm such as increasing the burden of care or prolonging suffering, and how to optimize care and communication with the patient and their families. The nutrition scientist may want to know what the implications of advanced cancer are on nutrient requirements and utilization, whether there are markers that would differentiate between cachexia and simple starvation, and whether it is possible to use specific nutrients to modify the disease process. This review will provide insights into the understanding of the role of HPN in advanced cancer and opportunities for further investigation.

Determinants of quality of life in home parenteral nutrition.

PURPOSE OF REVIEW: To highlight the most important and salient articles regarding home parenteral nutrition and quality of life published within the last 3 years. RECENT FINDINGS: In recent years, quality of life research in home parenteral nutrition has highlighted the need for a therapy-specific validated questionnaire. Several papers suggest a greater psychological input is required to better understand and evaluate this patient population. Issues surrounding the use of home parenteral nutrition in malignancy have arisen, prompting discussion on ideal timing and candidacy for home parenteral nutrition. Intestinal transplantation is evolving and improving, making it a possible alternative to home parenteral nutrition. Earlier referral is suggested as late referral can result in poorer outcome. SUMMARY: Home parenteral nutrition is a life-sustaining therapy for individuals with intestinal failure. There is now a relatively large amount of research into the quality of life in this population, but more focused measurements (in the form of validated therapy-specific questionnaires) are required to answer questions relating to cancer and intestinal transplantation.

Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families.

BACKGROUND & AIM: The benefit of home parenteral nutrition (HPN) to advanced cancer patients is often debated and an evidence-base for parenteral nutrition (PN) in palliative care is lacking. The aim of this study is to investigate the experiences of HPN from the perspective of advanced cancer patients and their family members. METHODS: Semi-structured interviews were conducted with 13 advanced cancer patients with experience of HPN and 11 family members. The qualitative data was analyzed inductively using constant comparison. RESULTS: The most salient positive feature of HPN was a sense of relief and security that nutritional needs were met. This was said to have a direct and positive effect on quality of life and on body weight, level of energy, strength, and activity. Positive statements about HPN were often coupled to the benefits of being enrolled in advanced home care. The most salient negative effect of HPN described was related to restrictions in family life and social contacts for the whole family. However, benefits of the HPN treatment were generally said to outweigh negative aspects. CONCLUSION: This study indicates that the interviewed cancer patients and their family members experienced physical, social and psychological benefits from HPN treatment.

The path from oral nutrition to home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families.

BACKGROUND AND AIM: Little is known about the perspectives that patients with advanced cancer and their family members have concerning nutritional problems and nutritional support. The aim of this study was to investigate their experiences of the nutritional situation prior to introduction of home parenteral nutrition (HPN) in order to understand factors contributing to the decision to accept HPN. METHODS: Semi-structured interviews were conducted with 13 patients with advanced cancer who had received HPN and 11 family members. The constant comparative method was used for data analysis. RESULTS: Patients and family members described the nutritional situation prior to HPN as a source of worry and often desperation. Patients reported wanting and trying to eat, but being unable to do so. Family members experienced powerlessness and frustration, as they could not enable the patient to eat. A lack of attention to nutritional problems by the hospital staff was described. The offer of HPN came when patients and family no longer felt able to solve the nutritional problems within the family. CONCLUSION: The desperate and chaotic nutritional situation in the family led to willingness to accept HPN. Because of the severity of the problems, HPN was viewed as a positive alternative.

Quality of life and concerns in patients with short bowel syndrome.

BACKGROUND & AIMS: the life situation in patients with short bowel syndrome was described, with focus on aspects of quality of life, worries, concerns and coping. METHODS: Twenty-eight patients (19F/9 M) participated. Mean age was 54. Eight were on home parenteral nutrition (HPN). Quality of life was recorded using a visual analogue scale. Health-related quality of life (HRQOL) was assessed using Short Form 36 (SF -36) and compared with matched controls. Concerns were assessed using Rating Form of Inflammatory bowel disease patient concerns (RFIPC). Coping strategies were investigated using Jalowiec coping scale (JCS 40). RESULTS: Greatest concerns were fear of being a burden, having surgery and loss of energy. HRQOL was significantly reduced compared to controls. Patients' receiving HPN rated quality of life lower than those without HPN. The presence of a stoma appeared not to influence quality of life negatively but stoma patients expressed more concern. Confrontational coping style was most frequently used. CONCLUSION: HRQOL was low both in the HPN group and the non-HPN group. Having a stoma did not affect quality of life negatively. Fear of being a burden was the most frequently expressed concern, in the whole group as well as in subgroups. This information should be integrated into the care of these patients.

Home parenteral nutrition: does affiliation with a national support and educational organization improve patient outcomes?

BACKGROUND: For patients receiving home parenteral nutrition (HPN), catheter-related bloodstream infection (CRBSI) and reactive depression may significantly impact quality-of-life. This study evaluated the influence of patient affiliation with a national organization promoting HPN education and peer support on these outcome variables. METHODS: Using a case-control design, we compared 2 groups of affiliated patients with nonaffiliated controls, who were matched for diagnosis, HPN duration, sex, and age. Group 1 data were obtained from patients in large HPN medical practice programs. Group 2 data were obtained from patients in small medical practices with a small number of HPN patients. All participants were evaluated by structured interviews every 6 months over 18 months. RESULTS: In both data collection groups, affiliated patients (A) had significantly higher (mean +/- SD) quality-of-life scores compared with nonaffiliated patients (NA): (Gr 1: A, 19.8 +/- 4.7 versus NA, 17.6 +/- 5.6, p = .05; Gr 2: A, 20.4 +/- 5.2 versus NA, 17.3 +/- 4.8, p = .05). Affiliated patients also had lower depression scores (Gr 1: A, 10.9 +/- 10.4 versus NA, 20.4 +/- 13.6, p = .01; Gr 2: A, 12.5 +/- 9.6 versus NA, 18.5 +/- 10.8, p = .03) and a lower incidence of catheter-related infections (Gr 1: A, 0.10 +/- 0.3 versus NA, 0.60 +/- 0.55, p = .01; Gr 2: A, 0.27 +/- 0.55 versus NA, 0.71 +/- 0.64, p = .02) than nonaffiliated patients. CONCLUSIONS: Affiliation with an organization that provides ongoing HPN education and peer support was associated with significantly better HPN outcomes. Alternative explanations are discussed in relation to limitations of the case-control design.

Quality of life and nutritional support in patients with cancer.

Nutritional support is often initiated in patients with cancer who are unable to meet their nutritional needs by the oral route. Much has been written about the effect of nutritional support on physiological outcomes in patients with cancer. However, less is known about the relationship between improvement of nutritional status and quality of life. Trends in the treatment of cancer highlight the need for an examination of home nutrition support and quality of life. The purpose of this article is to describe the state of knowledge about the relationship of home enteral and parenteral nutrition support and quality of life. Research exploring the dimensions of quality of life (physical functioning, psychological status, interpersonal relationships and social functioning, financial concerns, and symptoms, and complications of nutritional support) is presented. Implications for clinical practice and research are identified. The trend for increased numbers of patients on home nutrition support emphasizes the need to understand the patient's and family's experience in managing this treatment in the home.

Home parenteral nutrition in advanced cancer.

The use of home parenteral nutrition (HPN) in advanced cancer evokes ethical problems related to risk/benefit, patient autonomy, justice, medical futility, and cost. Case series have been beneficial for some patients, particularly when survival is expected to be longer than 2 months. A team approach to involving the patient and family in evaluating risk and benefits is preferred. Social workers serve a key role in enabling the patient and family to make end-of-life decisions by helping them clarify the psychosocial and ethical aspects of these decisions. Clinical standards and case law will further define whether HPN in advanced cancer is futile treatment. Broader social issues of rationing, access to HPN, and costs must be addressed. Further research on outcomes and patient/family decision making on HPN are needed.